…the stills & prose of our family days.

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And just like that her tone shifts. Her body language softens and she reaches out to touch my chin with the hand that was methodically rubbing the homework sheet the second before. I pick up the pencil she slammed down and offer it back to her as we make eye contact and I smile and hug her as she pulls her bottom back in from its signature bird perch pout. After a deep breath and a good hug, I ask her if she’s ready to keep working. She nods and fidgets a bit in her chair and with the paper, and then looks back at me.

“Kefir?”

“Yes. I’ll get you a drink after we finish this problem. First math. Then drink. Ok?”

Nodding, she positions her pencil. “Math. Kefir. Ipad.”

Um…..

“Help”

As she pushes the paper toward me, I reread the question and pull out the counter animals to show her the math problem and use my finger to point to the illustration on the page. She touches each animal in turn and starts counting from one.

“Mmmm. Look again. Which number is bigger?”

“7”

“Good. Count on from 7. Eig….”

As I pause mid-word, she picks up the pace and slides three bears over to the seven dinosaurs and smiles proudly as she writes the 10 in the blank space. She can do this.

Seven is twirling and running and besties with pinky promises and BFFs and side pony-tails and Justice shirts with skorts. It’s second grade and hip-hop dance class. It’s learning to read and write while staying in the lines. It’s new reading glasses and soccer games and watching other people open presents on Youtube. It’s Magic-clip dolls lined up and Winx Club fairies driving cars. It’s Brownies and gap-tooth smiles. It’s playing cars with the little sister and stealing the big sister’s fairy books. It’s hogging the IPad and writing the grade of WOW on the homework before turning it in. It’s sitting with pals rather than parents at the volleyball game and getting up and trying to make toast and pour kefir in the morning before the parents wake. It’s playing Taylor Swift in the car and singing along to Taylor the Latte Boy. It’s pancakes with smiley faced whip cream and sprinkles and living room sleepovers with sisters. It’s knowing the words in your head but not being able to quite articulate the answer in time with the others and standing back to watch until you can get it right without faltering. It’s being independent in the pool with the help of a floatie and scheduling a first orthodontist appointment. It’s running off with the big girls at family camp and dancing when you feel like it. It’s holding the babies at playdates and your sister’s soccer games. It’s finally speaking in full sentences and tween jargon. It’s a twinkle in your eye and sass on your lips. It’s only wanting your uncle and your dance teacher’s husband at your birthday party. It’s a bedtime lovey named Tigey that you call a bear. It’s after school tutors and speech and occupational and physical therapy appointments each week. It’s more speech and occupational therapy and resource classes in school. It’s a memorized lunch pin and getting yourself out of the car without too much complaint in the drop off line. It’s a summer of day camp and a hospitalization and too many homedays for pneumonia. It’s visits with grandparents and aunts and uncles when the rest of your family gets sick too. It’s cheering your spelling words and then sword fighting them. It’s asking for babysitters and movie dates and manicures. It’s outgrowing the need for your pediatric cardiologist and the ongoing quest for the perfect ADD medication. It’s society seeing you as disabled and your friends and sisters seeing you as not having a disability. It’s drinking through a straw but being cool enough to carry a water bottle to class. It’s digging for hours in the sand and eating all the croissants your tiny hands can hold. It’s pulling your own suitcase in the airport just as long as it has your Barney pillow tucked in to the pocket. It’s refusing to let your mom cover you at bedtime and insisting it be your dad. It’s you.

Each October, families that blog about life with Down syndrome commit to a daily exercise of blogging every day (31) in October to raise awareness and acceptance about Down syndrome (T21). For the past seven years I have happily jumped in the fray and shared pictures, stories, resources and information about Down syndrome. I’m entering my eigth year of this beloved practice. The first two years that I joined 31 for 21 after the birth of the Quail, I continued on my typical daily blog posts at that time, taking care to ensure that I did post every day for the month. I was still able to maintain a semblance of order and time to devote to daily writing with the categories I initially organized my thoughts around. The third and fourth year, I had not had the time to post daily musings, in a good while, but I still had an extensive archive of photos I hadn’t had time to edit and share yet. So, I posted mainly images labeled with little tidbits about the Quail that make her both extraordinary and ordinary.
I hit my peek in 2013. In that last year, I LOVED participating. And still have every intention of making it into a book for myself. Our friend Molly Flanagan had shot some wonderful lifestyle photos of our family and our daily goings-on and I had told her that I loved them so much that I could narrate a story about each image. And that is what I did. I continue to go back to these photos and narratives. They are a gift- each single one. And I reread and still nod along as if I’m reading someone else’s writing and story. I still find myself thinking- yes! That’s what MY life is like. And then others shared with me how they felt about this project and how they could relate to it. And then writers that I love shared it with their friends. And then wonderful things happened. I dug out my brave bones, like I tell my children to every day they go out into the world and requested a fundraiser at my work for Down syndrome awareness and the Buddy Walk. And together we raised over $1700. And the next year we did just as well. Both times I was humbled, and felt so proud to have my village lift me up and help me help myself and others. The response was unexpectedly overwhelmingly positive. People I hadn’t had the pleasure to meet in person contributed and took the time to get in touch to say how Down syndrome is a part of their life and how lovely and inspiring our Quail is. The good people at my work took it upon themselves to write up our advocacy efforts in our statewide celebration for a nomination for a humanitarian award which we won this spring. And later that summer I was informed that the nomination was then passed on to the regional competition and we won that as well! If I’m going to be recognized by my workplace- there is no greater joy then realizing that while they appreciate my work- they also appreciate my heart and those it belongs to. The next year we did the same fundraising and actually had friends join us for the walk. I managed to write and then, well then the big void came on, but all the voidier than even the years past. And in 2015. It was even harder to find the time and energy to write. And I only managed to write for seven days.

But as the saying goes, I’m going to stand up again. Because you only fail if you fail to try. And there’s a little girl counting on me. On us. On every single one of us. And if she can stand up and try again. So can I.

Frowning into the phone, I feel fairly certain that my grumpiness radiates off my non-answer enough that my preference doesn’t have to be spoken out loud to Lovey. His question is the token one that is thrown out at some point each Friday even knowing its doomed fate before it appears on his lips. I’ve made the last drive of the week from work to the girl’s daycare to pick them up. They dance around me asking if it’s pizza and movie night and if tomorrow is a home day as they shove pink and blue backpacks and fleece blankets and strawcups and markered papers into my quickly filling arms. We don’t have to go anywhere and so I don’t even really want to think about trying to. My response is reflexive, not thought out. As the girls shout out the color of their daily stars they landed on to me I whisper, “Maybe next week.” into the phone before clicking it off.

It’s been a long week and the laundry isn’t folded from the weekend before and the bags haven’t been unpacked from two weekends before and the wrappings from Zuzu’s birthday celebrations should have been packed back up and stored until the next celebration rather than being left to the unyieldingcrayoning, scissoring and glueing of the crafty little hooligans we live with. I didn’t really want to go anywhere.

I never want to go anywhere on a Friday evening.

I want to go back into my cluttered house and ignore the laundry, the dishes, the bills, books, clothing and toy sorting I’ve intended to organize for weeks and spend the evening pondering my gluten-free status and actually read the all of the articles I saved on Facebook throughout the week, and pin more items to my Pinterest boards knowing I won’t actually make any of them and close my eyes glorying in the lack of need to turn the alarm on and eat chocolate-cherry Kind bars while watching Sherlock clips on You-tube as the girls rock-paper-scissor-off Netflix choice rights with the TV in the living room.

Anything but make an effort and publicly parent over nachos and quesadillas. Not even the promise of a margarita can usually pull me out of this pattern of slovenly indulgence. I give in to this instinct most Friday nights. A cheese pizza bakes in the oven while the Netflix UN meets to confirm the order of Fairies vs Monsters vs Ponies. The neon-green, white and orange striped picnic blanket is laid on top of the black patterned living room rug and the Quail lines the stripes up precisely with the inky swirls while Sugarplum dive-bombs her from atop of the ottoman and Zuzu commandeers the remote for herself. Lovey and I eventually trail in and sit on the couch waiting for them to finish their pizza slices and crawl up under our pillow-propped arms or we may meander off to entertain ourselves, knowing that at least two of the three will eventually give up their cartoon images to snooze in our bed to the sounds of Danish voices solving crimes. Most Fridays it’s a mix of both.

It seems like nothing.

It’s so very plain and ordinary and routine and….comfortable. When one of us try to suggest any other plans, they are typically met with resistance by at least half of us. It takes a lot to get us out of the house on a Friday night with these children. And it’s easy to devalue those few hours spent together as “nothing” going on.

But, to those girls, these unencumbered hours are a comfort. A soft place to fall that lets them relax their brains and their bodies as they cuddle into their parents knowing there are no real expectations of them other than the UN agreement of what order to watch their shows in turn.

……Taylor Swift on repeat in the car on the way to school and back home. It’s playing with Miley in class and after school and at dance and Daisy Scouts. It’s painting every color on one page quickly and pulling out a second page before anyone can object. It’s reciting Pete the Cat books and watching Wynx Club. It’s recess time with Laurel and Blair and eating chocolate bunnies and eggs and cake and cooking real and pretend muffins. It’s learning to read and being able to say “Look at me” and “I need help” and “It’s funny.” And “I’m serious” and “No” and “Yes” when you feel you need to. It’s Mrs. Schmidt and Mrs. Johnson and Mrs. Dobson and Mrs. Lee and singing along to the Frozen soundtrack and sitting by Brookes in class. It’s Mrs. Kahli and the color purple and tap shoes and ballet slippers. It’s digging sand into cake shapes and Uncle Scott swinging you out over the waves. It’s going to soccer and dance and the spending each school day at the big school with Maddie and lining up for recess and lunch where you can pick grilled cheese any day you want. It’s sword fighting with Carmen and Ashley painting your nails. It’s being good and excellent and naughty and stubborn and helpful and caring and loving. It’s playing ball and donut stand and Odd Squad and Superman and Sister with Emma and then running giggling to a corner to hide when Momma tells you both to settle down. It’s Daddy tucking you in and Momma helping you with your homework. It’s snuggling up to your family and knowing you can go play Magic-Clip Dolls and your family will still be there when you want to snuggle more. It’s drinking kefir from a straw-cup and eating cheese slices and English muffins. It’s playing doctor and teacher to your sisters and your dolls and your animals. It’s a Barney pillow and Ruff-Ruff blankie under a purple fuzzy Frozen blanket. It’s movies and popcorn and Mexican restaurants and breakfast sandwiches. It’s picnics in the yard and sleeping in your sleeping bag on your Dora couch when you want a break from snuggling up to your sister. It’s going to computer lab and library and art and music and even PE. It’s baking mini-pies and scones and cakes and cookies and pancakes shaped like the initials in your family’s name. It’s your turn in the canoe and the pool and the paddle boat and the stroller. It’s picking pumpkins and blueberries and strawberries and apples and Easter eggs. It’s being her mom.

I looked over at the stranger who was grinning down at the Quail sitting in my shopping cart.

“Excuse me?”

“Your smile. She looks so much like you.”

I smiled back at the woman wondering if she fully understood the gift she had just given me.

Only hours after the Quail was born the on-call pediatrician was standing over the end of my bed unwrapping the Quail from the pink and blue foot-printed hospital blanket her father had just burritoed her into less than an hour ago. He had been in already to check her toes, her heart, her nasal bone and palms. Looking for a clear sign that she either did or didn’t have Down syndrome. Only a few weeks earlier we had visited the Maternal Fetal Medicine OB/GYN and he had explained that since they were performing the ultrasound so late in the pregnancy they had really not been able to see all the soft markers that would indicate Down syndrome. “She may have it or she may just be a genetic match for your older daughter.” In my first full-term pregnancy I had been to see Dr. G as well. I have a couple of blood clotting disorders, I’d had a couple of miscarriages and I wasn’t exactly a spring chicken by obstetrics standards. During those visits Zuzu had exhibited what I now realize were soft markers for Down syndrome. Only back then, those words hadn’t been uttered. It’s why each month, when the OB would suggest I could go back to Dr. G at any time and I could have any genetic testing I felt like; I smiled and declined. Zuzu had shown hydronephrosis and shortened femurs and other than one urinary tract infection, had been none the worse off. In fact, she measured in the 75th% for height. Shortened femurs be damned. As I’d seen each OB in the practice I used in turn, I’d smiled and turned them down on their offers for additional checking; until Dr. B, by far the most direct in the practice and the one who had delivered Zuzu, said outright that they thought there was a good chance the new baby had Down syndrome and I should really go get a level 2 ultrasound done at least. So I could be prepared. With his frankness, dimming my smile, I had nodded and headed over to see Dr. G. Again. My only clue something was amiss was his question of where my partner was when I stepped in his office to go over the ultrasound results. I had assured him I was fine. As we talked I joked that he should see Zuzu’s height. He nodded, shuffling the papers, remarking that it was less likely as the baby was a girl and assured me that after she was born the pediatrician would take a close look to see if further testing should be done. I agreed better safe than sorry and headed back to my car. Stiff lipped and quiet until Lovey’s voice came on the line and I started to tell him what they had said and the dam finally broke.

“I’m 75% sure she doesn’t have it but we’re going to draw blood and send it in for analysis.” The on-call pediatrician called in his colleague for a second opinion and between the two of them they really weren’t sure.

“Do her eyes look like anyone in your family?” Lovey and I shook our heads resignedly. Not really. It was too soon to know by color. But her newbornness, was definitely unique to herself and not that genetic match of Zuzu we were expecting.

Three weeks passed before the call would come and our own pediatrician would give us the final call on her genetic make up. He assured us in an involved and loving home like ours, most of what she would experience as somewhat limiting, could be medically managed nowadays. As he ran down a list of what to keep an eye out for, I sank down on the bed. The smile that had lit up my face as I snuggled the Quail close to me and breathed in her baby head just minutes before, once again faded from my lips. Earlier that day I had made a round of angry phone calls to the geneticist, the hospital, the pediatrician. Tired of wondering. But at that one moment, as time stopped and our doctor explained how an Early Intervention expert would be calling us for more information in the coming week, my place in the world had shifted and I wished I hadn’t been so damn ready to know. I longed to not be so damn sure. I was the recipient now. No longer the public servant. I had a daughter with Down syndrome. A daughter whose eyes didn’t look like mine. A daughter who hadn’t shown me her smile yet. A smile that would mold into my own in the months and years to come, but not right then. Over the next few days I continued to snap pictures but eyed them all speculatively before sharing them. Did she look like what I thought of when I heard Down syndrome? Sometimes. Sometimes I could see just the baby, my baby and sometimes I saw the otherness. I hid those pictures. I wanted other people to see her, and me still. Not the otherness. I cried when I flipped through those pictures. Then the time came to make our birth announcement. We needed a photo. I wasn’t comfortable with a single one I had taken so far. Lovey cleared off our mattress in the magic hour of afternoon light and laid out our sheepskin that had been a gift when Zuzu was born. Her jaundiced skin contrasted it as she slept on, oblivious to our arranging of her limbs. He snapped a few shots, moved her a bit more, angled himself level with our bed and backed up as I looked solemnly on over his shoulder not smiling or laughing. Not confident at all in how we would do this….

The next day as I sat at the computer editing the shots from the afternoon, I smiled seeing that the magic hour had done its job. Her sweet rounded cheeks gave way to her button nose which looked a lot like her sisters and my baby pictures. Her feathery locks of hair folded over her soft forehead. Her small pinky curled up by her ear. And there was my baby again. The one that had snuggled iin to me before the call verifying her otherness. Lovey had given me a great gift. A view of the Quail that I had known was there but still faltered over finding as my maternal hormones had their last bit of way with me.

“I know. She’s all me. And a little bit more. Thank you.”

Smiling warmly at the woman, I turned back and grinned down at the Quail as she giggled and mirrored my smiling face back. Together we turned the cart and went back outside.